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mitochondrial disorders and autism - Page 2

post #21 of 45
Quote:
Originally Posted by Rrrrrachel View Post

Can you ballpark "staggering" for me?

Can you ballpark "being more interested in snarking at someone rather than looking objectively at the point they've presented and then discussing it like a grown-up?"

post #22 of 45
Quote:
Originally Posted by Marnica View Post

I suppose staggering is a subjective term. But I will say that there are many cases as Taxi describes. All one has to do is google a bit and you could spend days looking at these videos. 

 

But Taxi has not given a number. Like Rrrrachel I genuinely want to know how many are we actually talking compared to the total number of vaccination given. Because all that I've read says the reaction rate is very small and 99.999% of babies do not have serious reactions. 

 

Of course I'm sad for those children who did suffer serious reactions, but that doesn't make it any less rare and any less unlikely to happen to the child of someone Googling vaccine safety online. 

post #23 of 45
It's hard for me to actually discuss it when the measures are so subjective, which is why I'm trying to nail down a ball park figure. It's difficult to find reliable information about sudden regression into autism.
post #24 of 45
I did come across this by way of Wikipedia, which I hadn't seen before.

http://link.springer.com/article/10.1007/s11065-008-9073-y/fulltext.html

I haven't read the whole thing, yet, but it cites that 15-47% of children with autism regress after developing normally. I haven't gotten far enough to see what portion of those happen seemingly overnight.
post #25 of 45
From the above:
Quote:
As previously mentioned, regression is slow and insidious, although about one-third of cases demonstrate more abrupt onset that becomes evident over the course of days or at most a few weeks. Rapid onset is more commonly associated with identifiable trigger events such as medical illness, emotional trauma, physical trauma, or seizures (Kurita 1985).

So 15-47% (the majority of studies seem to put it around 30%) of autism cases are regressive. Most of those regress gradually, about one third (so 5-15%, most estimates around 10% of all autism cases) happen more suddenly (but no mention of overnight).

So lets see, about 1% of the population is autistic, so around .05% to .15% of the population has regressive autism? Or 5/10,000 - 15/10,000? And then some unknown subset of them happen more suddenly than over a few days? I have embarrassing issues with place value sometimes, so someone check my math!
post #26 of 45
I thought this was interesting, too.
Quote:
One possibility is that regression reflects the late sequelae of congenital dysfunction that is present but silent in early development. This possibility finds support in results showing that a proportion of children with RASD demonstrate subtle to obvious pre-existing problems in development. According to this viewpoint, regression may emerge between 15 and 30 months of age because pathological neural networks come “online” in this period of neurodevelopment that may be incapable of subserving a necessary role in mediating social and communicative behavior, or may otherwise have an inhibitory influence on the function of these systems.

This is in no way conclusive, and there are several competing theories addressed in the article. Even if it was the case for some or most cases of rasd, that doesn't rule out some of them being caused by vaccination, which would of course shrink the above estimates even smaller.

Also interesting is the article discusses how language regression is the most common form of rasd, so the number of children who regress over night into something like toe walking, circle spinning, and arm flapping is presumably even smaller than the above estimates, but I'm kind of off book there.
post #27 of 45

There have been a few reports on this thread. I want to remind folks of a couple of things from the UA for this forum: 

Intelligent, informative, and civil debate should be the shining light of this forum. Do not stoop to accusation, condescending comments and veiled insults against an individual's character or intentions in posting here, as if that will somehow discredit the person or information.

Reporting of posts is only for direct namecalling and severe personal attacks.

 

Members' attempt to elevate the conversation is noted and appreciated. 

post #28 of 45
Quote:
Originally Posted by prosciencemum View Post

 

But Taxi has not given a number. Like Rrrrachel I genuinely want to know how many are we actually talking compared to the total number of vaccination given. Because all that I've read says the reaction rate is very small and 99.999% of babies do not have serious reactions. 

 

Of course I'm sad for those children who did suffer serious reactions, but that doesn't make it any less rare and any less unlikely to happen to the child of someone Googling vaccine safety online. 

You have given me a very interesting idea; I'll see if some of the major autism support groups will consider doing a poll to find out how many of the parents who are long-term members have before-and-after video indicating vaccine reaction linked with onset of autism symptoms.  Perhaps they can make a YouTube channel specifically for such videos.

As you know, there are no numbers for me to quote, because no researchers have ever talked with the parents, or viewed their day-before-and-day-after videos. Every such parent I have ever met (I personally know 7), or corresponded with, or read/seen their testimony, has said the same thing: when they told their doctors what had happened AND WHEN (immediately after vaccines), they were blown off.  Their doctors told them that they were fantasizing,  that they were desperately looking for something to blame, that they were wrong. The doctors didn't believe them. They didn't believe that the parents wanted to prevent this from happening to another child; they just assumed that they were looking for something to blame.  

 

How many of you have thought the same thing?  I am ashamed to admit that that's what I thought.  Even after my own child had a severe reaction, I believed the nurse who told me over the phone that I was over-reacting. It took ALL of my children's reactions to convince me that there was something really wrong. 

 

Do you have any IDEA what it feels like to be accused of over-reacting when in fact, something is really terribly wrong?  Do you even care?

I only know one couple who managed to convince their pediatrician to view their video.  He admitted to them privately that they were clearly right, but told them flat out that it would put him in "the hot seat" if he were to report their reaction.  He advised them to immediately drop the whole issue, and to spend their energy on getting as much help for their son as possible, rather than proving that it was the vaccine that caused the reaction.  And by this time, it was far too late for them to bring their case to vaccine court.

So if the current "studies" of vaccination outcome are based on reports--or lack thereof-- from doctors who are either unable or unwilling to see that vaccination can cause brain damage, developmental regression, autoimmune disorders, and yes, symptoms of autism--then those studies are biased and inaccurate.

So we can't rely on those "studies" for information about something most of the medical community either pretends doesn't exist, or doesn't realize it.

The fact that otherwise intelligent and caring individuals point to flawed statistics instead of looking at the real human beings who have severe reactions shows why that information is so sorely needed.

 

If we compared vaccine reaction to peanut allergy, the typical scenario at the doctor's would be something like this:

 

“Mother: He just ate his first peanut butter sandwich, and suddenly, his lips and face swelled up, and he couldn't breathe!


Doctor: Calm down, don't jump to hysterical conclusions. Correlation does not equal causation. It was genetics. Or coincidence. Or both. But it had nothing to do with the peanut butter!

Mother: But we have peanut allergies on both sides of the family!

Doctor: Nonsense! We know peanuts don't cause reactions, because the peanut industry has kindly provided us with their own studies, done on kids with no family history or other risk of peanut allergy. They funded, directed, interpreted, and marketed these studies, and THEY say that peanuts don't cause anything more than a swollen arm. You let little Timmy eat all the peanut butter sandwiches he wants, and I'll write prescriptions for the swelling, choking, vomiting, etc. If he has trouble focusing on schoolwork while he's choking, we'll give him Ritalin, too. He looks a little blue, doesn't he? Let's give him Prozac.

Mother: I think he's blue because he can't breathe!

Doctor: Nonsense! You're clearly delusional. Here are prescriptions for Zyprexa and Seroquel for you, because you must be paranoid and a conspiracy theorist. And dealing with a difficult child must be depressing, so here's a prescription for Zoloft for you as well.”

post #29 of 45
I wasn't expecting you to quote a number, just asking what you think based on your experiences talkin to these families and movin in these circles. Are we talking hundreds? Thousands? Tens of thousands? Hundreds of thousands? Millions?
post #30 of 45
The majority of studies are not based on vaers data. I feel like we keep coming back to that. Vaers data is not the only system for monitoring vaccine safety in this country.
post #31 of 45
Quote:
Originally Posted by prosciencemum View Post

 

But Taxi has not given a number. Like Rrrrachel I genuinely want to know how many are we actually talking compared to the total number of vaccination given. Because all that I've read says the reaction rate is very small and 99.999% of babies do not have serious reactions. 

 

Of course I'm sad for those children who did suffer serious reactions, but that doesn't make it any less rare and any less unlikely to happen to the child of someone Googling vaccine safety online. 

How can Taxi give you a number? Those cases are "anecdotal". They are routinely denied as vaccine reactions by the very medical profession that claims such reactions are extremely rare.  That doesn't mean their stories are not out there. As I said one just has to look. I don't categorically label the thousands (at least and no I don't have an actual number) of families that have witnessed their child react to vaccines (only to be told it was merely a coincidence) as misguided and looking for something to blame. I take their stories into consideration. Nobody knows their child better than a parent does. For me it's food for thought.

post #32 of 45
Quote:
Originally Posted by Rrrrrachel View Post

I wasn't expecting you to quote a number, just asking what you think based on your experiences talkin to these families and movin in these circles. Are we talking hundreds? Thousands? Tens of thousands? Hundreds of thousands? Millions?

 

I personally know 7 (edit -- make that 8)  autistic children whose parents have before-vaccination and after-vaccination video.  I don't "know" them through the magic of internet, nor do I "know" them through autism support groups. I went to one autism support group meeting when my child was first diagnosed, and never went back, as they had a guest speaker (a psychiatrist) who was strongly recommending ADD meds and trying to sign people up for drug trials. 

 

So here's the breakdown:

 

1 is the grandchild of a neighbor.  2 are children of colleagues. 2 are classmates of my children. 1 is the brother of my middle child's classmate.  And 1 is the child of my brother-in-law's colleague, who has become a family friend. And 1 is the child of a relative-by-marriage (not a blood relative).

 

Wait a minute--that's 8.  Okay.  I know 8 personally.  I'm not counting  3 children of my husband's colleagues, because I've never met them, only heard about them. (And both hubby and I have small workplaces--fewer than 10 colleagues.

 

I'm not talking about how many autistic children I know.  This is JUST the number of children I personally know who had severe reactions to vaccines, and also have diagnoses of severe regressive autism.  Since this is the video age, all their parents have day-before-vaccination and day-after-vaccination videos.  I've only seen those videos for 3 of the children, and it's chillingly clear.

 

I also have a neighbor  whose kid had a vaccine reaction that caused a lifelong seizure disorder, but he does not have an autism diagnosis, so I am not counting him.  He does have an ADHD diagnosis, and has an unspecified mental illness (unspecified meaning his parents didn't share the diagnosis with the neighborhood) for which he is medicated and under the care of a psychiatrist.

 

I'm also not counting the children I know with diagnoses of high-functioning autism, Asperger's, or PDD-NOS.  And I'm not counting my own children.

 

And these children were all born within a five-year time frame.  I'm sure there are many more, both older and younger, but my paths have not crossed their parents' in our community.

 

You're the statician, Rrrrachel.  Based on my experience, taking into account that these are children I met through the mainstream community, NOT through any special needs circle, how many are we talking about?  Are we talking hundreds? Thousands? Tens of thousands? Hundreds of thousands? Millions?

post #33 of 45
I'm not asking for taxi to quantify how many of these cases are out there so much as ballpark what she considers "staggering"
post #34 of 45
Taxi I'm not sure I can really consider your experience a random sample so I'm not comfortable extrapolating it. I already took my statistician crack at it further up thread.
post #35 of 45
Quote:
Originally Posted by Taximom5 View Post

 

I personally know 7 (edit -- make that 8)  autistic children whose parents have before-vaccination and after-vaccination video.  I don't "know" them through the magic of internet, nor do I "know" them through autism support groups. I went to one autism support group meeting when my child was first diagnosed, and never went back, as they had a guest speaker (a psychiatrist) who was strongly recommending ADD meds and trying to sign people up for drug trials. 

 

So here's the breakdown:

 

1 is the grandchild of a neighbor.  2 are children of colleagues. 2 are classmates of my children. 1 is the brother of my middle child's classmate.  And 1 is the child of my brother-in-law's colleague, who has become a family friend. And 1 is the child of a relative-by-marriage (not a blood relative).

 

Wait a minute--that's 8.  Okay.  I know 8 personally.  I'm not counting  3 children of my husband's colleagues, because I've never met them, only heard about them. (And both hubby and I have small workplaces--fewer than 10 colleagues.

 

I'm not talking about how many autistic children I know.  This is JUST the number of children I personally know who had severe reactions to vaccines, and also have diagnoses of severe regressive autism.  Since this is the video age, all their parents have day-before-vaccination and day-after-vaccination videos.  I've only seen those videos for 3 of the children, and it's chillingly clear.

 

I also have a neighbor  whose kid had a vaccine reaction that caused a lifelong seizure disorder, but he does not have an autism diagnosis, so I am not counting him.  He does have an ADHD diagnosis, and has an unspecified mental illness (unspecified meaning his parents didn't share the diagnosis with the neighborhood) for which he is medicated and under the care of a psychiatrist.

 

I'm also not counting the children I know with diagnoses of high-functioning autism, Asperger's, or PDD-NOS.  And I'm not counting my own children.

 

And these children were all born within a five-year time frame.  I'm sure there are many more, both older and younger, but my paths have not crossed their parents' in our community.

 

You're the statician, Rrrrachel.  Based on my experience, taking into account that these are children I met through the mainstream community, NOT through any special needs circle, how many are we talking about?  Are we talking hundreds? Thousands? Tens of thousands? Hundreds of thousands? Millions?

 

And I don't know anyone who has had a vaccine reaction or autism.  Extrapolating causation from anecdotes isn't very informative.

post #36 of 45
Quote:
Originally Posted by crayfishgirl View Post

 

And I don't know anyone who has had a vaccine reaction or autism.  Extrapolating causation from anecdotes isn't very informative.

 Maybe to you, but I find it informative. As I said upthread It gives one food for thought. 

post #37 of 45

I know one child with autism and one in the process of receiving a diagnosis.  Neither set of parents feels vaccines were an issue (and their feelings should count as much as those who feel vaccines were at fault).  So, there's some more anecdata.

post #38 of 45
Quote:
Originally Posted by Rrrrrachel View Post

I'm not asking for taxi to quantify how many of these cases are out there so much as ballpark what she considers "staggering"

Oh, if that's all you want, then that's an easy one to answer.

 

I consider it "staggering" that I personally know 8 kids who have had severe vaccine reactions, along with videotaped evidence of neurological damage, showing both the day before and the day after vaccination, AND diagnoses of profound regressive autism. I think it's important to note that I am only listing children I know personally, and that I have met them all through the mainstream community, NOT through the "autism community."

 

40 years ago, the rate of profound autism was considered to be 1 in 10,000.  When I was growing up, there was ONE severely autistic child in our suburb (which coincidentally numbered around 10,000).  There were 4 small elementary schools, and everybody pretty much knew everyone else from nursery school, summer programs, church, synagogue, and sports.  

 

The fact that I personally know not one but EIGHT kids whose parents have video proof of vaccine reaction resulting in profound autism is staggering.

post #39 of 45
Quote:
Originally Posted by chickabiddy View Post

I know one child with autism and one in the process of receiving a diagnosis.  Neither set of parents feels vaccines were an issue (and their feelings should count as much as those who feel vaccines were at fault).  So, there's some more anecdata.

I know at least 6  less-severely autistic kids whose parents don't feel that vaccines were at fault, and several kids with either HFA/Asperger's or other neurological issues whose parents do feel that vaccines were at fault. I also know one kid whose mother says that her kid was "autistic since birth" (and he did receive all vaccines on schedule the first year, including the birth dose of hep b); she stopped vaccines after one year, but he's still autistic, so she considers that "proof" that vaccines weren't in any way involved.

 

But I didn't include any of that in what I thought was "staggering."

post #40 of 45
Quote:
Originally Posted by Rrrrrachel View Post

Taxi I'm not sure I can really consider your experience a random sample so I'm not comfortable extrapolating it. I already took my statistician crack at it further up thread.

 

You asked what I considered "staggering," and I answered.

 

You also asked me for numbers, but since you are the statistician, I thought it would be better if you figured out the numbers.  Since you don't really consider my experience a random sample, you wouldn't be comfortable with any numbers I came up with, anyway, so I'm not sure why you asked in the first place.

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